The Guardian Angels Trust is a small charitable trust set up in 2004 specifically to support the needs of terminally ill children and their families. The Trust was set up in response to the growing awareness that poverty does exist within New Zealand and that families who have a dying child are often thrust into a level of poverty as they struggle to do the hardest job that any parent will ever have to do.
The Guardian Angels Trust was set up to help minimise some of the financial stressors so that families can focus on supporting their terminally ill child to live as fully as possible for as long as possible. To that extent a commitment was made by the Trustees to raise money that would be given directly to families through practical means such as the provision of supermarket vouchers, help with household bills and incidentals that would directly benefit the wellbeing of the child and family and then help towards funeral costs as families begin acute bereavement.
The Guardian Angels Trust is fully registered and audited and has no administration costs.
Culturally, in New Zealand, children primarily die in their own homes. Families are supported by their extended families and their communities along with health services which are brought into the home. Sadly, in times of increasing economic hardship, families and communities struggle to provide a level of care which allows terminally ill children and their families to focus on ensuring the best quality of life for the remaining period of life for a dying child and the family. Although there is some provision within state care to meet the needs of caring for the sick child, it is means tested, difficult to ask for at a very vulnerable time, not easily given and allows only a basic sustenance level of living. The dying child and their families are a hidden and very vulnerable part of New Zealand society. The Guardian Angels Trust arose out of becoming aware of the specific needs of this group as the result of providing food for a family whose child died of a brain tumor.
Unlike other trusts, Guardian Angels is not tied to a specific childhood group of illnesses but cares for all families where there is no longer a possibility of a cure for their children.
The defining criteria for referral to the Guardian Angels Trust is that there has been a referral from the child’s Consultant to the Paediatric Palliative Care (PPC) Team at Starship Children’s Hospital. The PPC team at Starship provide clinical care for the child as well as psychosocial care for the child and family. Where possible they also coordinate care within the home and community. The Starship team is a multi-disciplinary team with one PPC and Pain Consultant, two Nurse Specialists, a Child Psychiatrist, a Grief and Bereavement Specialist and a Social Worker. All members of the team are aware of the acute need for resourcing the families they work with and all comment on how much poverty they see in the homes they visit. While some poverty may have pre-existed the child’s condition, for many families in New Zealand today the diagnosis of a life threatening illness and then transition to palliative care also begins an ongoing slide into a level of poverty which is difficult to acknowledge and even more difficult to ask for help to alleviate.
Guardian Angels (GA) primary commitment is to practical support for families rather than the big wishes that larger charities provide. However, GA will consider a request for small things that will enhance the quality of life for a child and family – such as a weekend trip away, vouchers for a mother to buy clothing for her family or a photographer to take special family photos. Small things can make a vast difference for these families and their children. One 3 year old wanted sparkly sandals. The GA trustees ensured that she had her sandals and her parents are left with the memory that they were able to meet their child’s wish.
Over the years the trust has been operating the work has grown alongside the commitment to these families. Some children are expected to die within a matter of days to weeks but the vast majority of referrals have remaining time which can be measured in months and occasionally a few years. During that journey the Guardian Angels Trust provides a broad range of support which allows the Starship team to ensure that whatever is needed (and which cannot be accessed elsewhere) can be provided to alleviate stress for an already highly stressed situation.
Guardian Angels response is immediate, the social worker carries supermarket vouchers with her at all times and if other needs are identified these are dealt with quickly.
While the outcome cannot be changed the journey can.